JONAH'S HEALTH HISTORY, PART TWO

Unfornately the original Health History is getting too long/cumbersome to update on this blogger website so I am going to start a new one.  

Here is the link to the original Health History, from Birth Sept 2010 to Sept 2023

Click HERE for Health History, Part ONE

December 2023

I haven't updated about Jonah's thyroid lately because things are proceeding quite nomally for kiddos with hyPO thyroidism (low thyroid function).  Jonah is considered this because his thyroid had to be removed in 2018 because of hyPER thyroidism or overactive thyroid.  As expected, bloodwork has to be done every 6mths to see if we are at the right dosage.  This will be the case until the boys are done growing and then checks can be done less frequently.

In December 2022, Jonah needed a higher dose because he had gained 20lbs in that past year so we went from 88 mcg to 100 mcg.  June 2023 labs looked great so nothing changed dosage wise.

December 2023 labs were a little weird.  His TSH lab was very low which means the dosage of 100 mcg is too high, however his free T4 was in normal range.  Usually that would be out of range according to how out of range the TSH is.  So the doctor kept Jonah on the 100 mcgs and wanted a retest in 4-6 weeks.

UPDATE: His labs from 1-16-24 show is TSH still low but T4 normal so I'm waiting to hear what the doctor says about changing the dosage. 2nd UPDATE: keep dose as is, no changes.

12-15-23/1-10-24

As indicated in the Part One History, Jonah was referred to ENT because of having strep in Feb 2023, June 2023 and then again in September 2023.

First some explanation of Jonah's ENT history- mainly why did ENT drop out of the picture after Jan 2018 and again Feb 2020?

1. Jonah had a sleep study in Nov 2017 which came back as mild sleep apnea.  He was referred to ENT.  ENT said removing tonsils was up to us because tonsil size was in gray area- not so big that surgery was a definite.  It was decided to try nasal spray (didn't work out because it made Jonah very hyper) and then a sleep diary for 30 days. I confess this sleep diary didn't go anywhere because Jonah's Grave's disease became the focus from 2018 until his thyroid removal surgery in May 2019.  Tonsils didn't really start to become an issue again until Feb 2020 when frequent sinus infections started.  

2. In Feb 2020, Jonah had been frequently sick with sinus infections.  His tonsils were very enlarged.  ENT at that point said having Jonah's tonsils removed was strongly recommended.  It was decided that we would give the latest dose of antibiotics for sinus infection a chance to clear things up and then reassess in May 2020 to see if tonsils were still so enlarged.

3. March 2020 COVID started and Jonah was home from school.

4. In May 2020 when ENT called to set up the follow up appointment, I let them know that Jonah had been terrifically healthy these past few months with no cold or sinus  infection issues.  Because of COVID stuff, it was decided to just put the tonsil surgery question on pause for now.  At this point, no elective surgeries were happening and even  necessary but not urgent surgeries were being put on hold since things were pretty strict about COVID.

5. August 2020 is when Jonah's kidney issues started and frankly his tonsils were the last thing on anyone's mind.  Plus Jonah was on antibiotics for his kidneys from August 2020 until January 2023 so in this mom's opinion, he didn't have any sinus issues maybe because he was under that general protection of antibiotics- my words, not a doctors...

6. Interestingly enough, Jonah got strep in February 2023 right after stopping his kidney antibiotics in Jan 2023, and then as stated previously he got it again in June 2023 and September which led to this 12-15-23 ENT referral- new ENT because our previous ENT has since retired.

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So now at Jonah's 12-15-23 ENT/PA, it was discussed that Jonah's tonsils are enlarged and should probably come out because of the size and the issues with strep. However, because his last sleep study was in 2017 and showed mild sleep apnea, it was prudent for him have another one just to see if tonsils were making his apnea any worse.  At this appointment, I told the doctor that Jonah's snoring did seem the same to less intense over the past 7 years so neither the ENT/PA or myself was real concern sleep apnea would be an issue at this point.

Another issue discussed at the 12-15-23 appointment is a growth that we noticed on Jonah's uvula.  A 1-29-24 appointment was set up with the ENT for him to look at this growth.  ENT/PA thought he would probably want to remove and biopsy it either during tonsil surgery or it's own procedure.

On 12-22-23, Jonah got sick again with strep symptoms.  He tested positive and was put on 10 days of antibiotic, however the urgent care doctor said we should discuss the possibility of Jonah being a strep carrier with our ENT.   When I spoke to the ENT/PA, she indicated Jonah could possibly be a strep carrier meaning he always will have strep present.  The problem with him being symptomatic is we will never know if he actually has active strep or is just testing positive because he's a carrier.  It was decided to give him another 10 day course of antibiotics from his 12-22 round and then test him for strep at his 1-29-24 ENT appointment (if he's showing NO systems) to see if strep still shows up.  

Now on to the 1-10-24 sleep study: it showed Jonah now has SEVERE sleep apnea which came as a surprise to us.

This severe diagnosis now puts Jonah on the fast path for tonsilectomy because there are now 3 reasons for them to be removed: severe sleep apnea (most important reason), enlarged tonsils, and frequent strep.  If it was just for enlarged tonsils and frequent strep, normal scheduling of the surgery is going into May 2024.  Now it's looking like surgery could be in next month or so.  

During surgery the ENT will  do an endoscopy to check Jonah's throat for other obstructions contributing to sleep apnea, remove tonsils and adenoids, remove ear wax, and biopsy the growth.

UPDATE: 

Surgery scheduled for 2-5-24.  Jonah did end up having another case of strep starting 1-15-24.  

He is now on antibiotics until surgery to prevent another case happening before surgery.

1-16-24

Jonah's kidneys continue to look great at his one- year check.  Left kidney is still larger than normal (13.7 instead of 9.79 normal), but urologist thinks this might just be normal for Jonah.

We are going to continue with 2-3 hour bathroom schedule and stay on the meds to help with voiding muscles.

The hope of being fully trained is still on hold at this point because of the upcoming tonsil surgery which could be stressful in itself on Jonah plus doctor feels Jonah needs to mature both physically and cognitively yet before we put any demands on him for full training.

2-5-24

During Jonah's tonsillectomy surgery, the ENT did a nasal endoscopy to see if there were any other issues that might be contributing to Jonah's severe sleep apnea.  He discovered 2 things:

1. The back of Jonah's tongue falls back when Jonah sleeps.  Hopefully with the tonsils out, Jonah's tongue will start to "behave".  Another sleep study in a few months will determine how the tongue is working without tonsils.  Otherwise, when Jonah is a bit older, there is the possibility of a sensor that can be placed in the back of his throat that would help stimulant those muscles to keep the throat in place (similar to how a pacemaker works with the heart).  Right now this surgery is only approved for people 16 years and older.

2. Jonah has unilateral choanal atresia- blockage of his right nostril.  The ENT was very surprised to find this condition.  He doesn't see it very often.  The blockage can be made completely of bone or a combination of bone and soft tissue.  A CT scan is needed to determine the severity of the blockage.  It is a congenital condition which means it is something that did not form correctly in utero.  It is rare, 1 in 7000 births.  Whether this needs to be repaired by surgery will be determined by the CT scan and if there is any improvement when Jonah has another sleep study in a few months.  Since it only affects one nostril, it is possible Jonah would not need to have this fixed if removing the tonsils reduces his sleep apnea.  

Click HERE for article explaining Choanal Atresia  

Click HERE for another article

2-26-24

ENT ordered a sinus CT to confirm his finding of choanal atresia.  

6-18-24

After a few months of recovering from tonsil removal. the ENT recommended another sleep study so it could be determined how much removing the tonsils is helping with the severe sleep apnea.  

This sleep study showed some improvement because of no tonsils.  Jonah went from 32 episodes per hour to 19.  However, anything over 10 episodes in kids is considered severe so Jonah is still considered to be dealing with significant apnea.

This means our next step, according to the ENT, is to repair the blockage in his right nostril which is scheduled for 10-29.  Hopefully this will cause another improvement in Jonah's sleep apnea score.  

I'm guessing another sleep study will be done after healing from that surgery.

Fall 2024

Jonah stopped wearing his knee braces for 2 reasons: they were too small and he was hardly having any incidents of his knee giving out on him and falling. 

10-29-24

Choanal atresia repair surgery was done yesterday.  After Jonah recovers from this surgery, he will have another sleep study to see if this opened airway makes any improvement in his sleep apnea scores. Doctor is thinking there will be some improvement from the score of 19, but it doesn't seem like he is confident Jonah will move out of the severe apnea range even with this repair surgery. 

1-15-25

Jonah had his 2nd post surgery follow up appointment with the ENT doctor today.  Everything looks great!  The choanal atresia repair has remained opened.  

Now the next step for Jonah is to have a sleep study on 3-12-25 to see if this repair surgery improves his sleep apnea score.  His score before the surgery was 19 events per hour.  Doctor says the safe range is 5 and under.  Doctor is concerned that Jonah's floppy throat/tongue muscles will still be a factor in causing sleep apnea. 

1-21-25

Jonah had his one year follow up with the urologist today.  Everything looks great!  In fact Jonah doesn't need to be checked again until January 2027.  What a change from the constant checks we had from August 2020 thru January 2023.  This has been a long road since the emergency surgery in August 2020.  We are very glad we can putting this kidney issue in our rearview mirror.  Jonah has recovered from his severe hydronephrosis of his kidneys.  Praise the Lord!

To insure that he continues to have healthy kidneys, we are continuing with his daily Flomax medicine.  

3-20-25

On 3-12-25, Jonah had a sleep study to follow up on if there was improved after the nasal repair surgery.  

Based on my reading of the results, Jonah's sleep apnea events per hour are down to 6!  He was at 32, then after tonsil removal it dropped to 19.  These numbers still have him as severe sleep apnea.  However, this number of 6 puts him in the moderate category.  So if that is the case, there is a good chance Jonah will not need to have the apnea implant device surgery!  Relief!  

So we are waiting to hear the official word from Jonah's ENT, but we are hopeful his sleep apnea is in the rear view mirror because of the October 2024 nasal repair surgery!

Early April 2025 UPDATE: ENT doctor called: 6.6 is a great improvement.  In fact, Jonah is now below the number that would warrant the implant surgery for sleep apnea (that was above 9).  So no more surgery needed!

However, his age would show that he should be below 5 for safe sleeping purposes.  So ENT will consult with sleep doctors to see what needs to be done in terms of monitoring Jonah's moderate sleep apnea.  Waiting to hear from sleep doctors...

Mid April 2025 UPDATE:

ENT consulted with sleep doctor to see if there was anything that needed to be done to get Jonah down to 5/hour.  Sleep doctor said no interventions needed at this point- she felt comfortable with 6/hour. She did recommended another sleep study in a year to see if Jonah is still in this 6/hour range. 

October 2025

Jonah's labs for his thyroid were in normal range.  No adjustments of med necessary.